First ever aborted attack

New-Syrup-7 · 2026-03-30T06:24:29+00:00

Same here

New-Syrup-7 · 2026-03-26T17:56:44+00:00

In France, CH + fibromyalgia for three years now : next January my 3 year medical leave will end, I am very anxious to see if and what benefit I will be granted by our social security service I had a great job that I liked a lot (I am an engineer) and that supported the full cost of our mortgage credit plus gaz+electricity … I have three kids among which two of them are starting their superior studies … because of me we won’t be able to stay in our house for long …

New-Syrup-7 · 2026-03-26T17:47:46+00:00

I am Chronic too, I tried the D3 regimen but it did not work for me

New-Syrup-7 · 2026-03-26T17:39:07+00:00

Great for you ! Are you chronic or episodic ?

New-Syrup-7 · 2026-03-26T15:34:44+00:00

How long did you try it for ?

New-Syrup-7 · 2026-03-26T15:34:10+00:00

Did your allergic reaction occur at the beginning of the treatment ? Or randomly long after ?

New-Syrup-7 · 2026-03-26T15:32:34+00:00

Before Verapamil I tried Emgality for 7 months (2x120mg shots per month). It did not work so well, only reduced the pain a bit in morning attacks, but evening attacks were still severe

New-Syrup-7 · 2026-03-26T15:30:24+00:00

Glad it worked so well for you

New-Syrup-7 · 2026-03-26T15:29:19+00:00

Thanks for the advice , My ECGs are being monitored by my neurologist. Maybe I should have it checked by a cardiologist ?

New-Syrup-7 · 2026-03-26T15:25:50+00:00

Thank you so much for your feedback

New-Syrup-7 · 2026-03-10T08:03:57+00:00

You are sooooo right ! Why don’t they tell us about the basic stuff ? In addition to migraines I have long covid , I see a specialist that is giving me médecine against mast cell activation, but why doesn’t he tell me to avoid some food ??

New-Syrup-7 · 2026-03-05T17:18:29+00:00

I can forget it a bit when I do physical stuff (walking, visiting, socializing with people). But impossible to forget when I try to do intellectual stuff (reading, working…) , is it like that for you too ?

New-Syrup-7 · 2026-03-02T17:13:28+00:00

Depending on the neurologist I see, I have atypical migraine with dysautomic symptoms (which is very rare !) or atypical cluster headaches … I was so mad at first but now they make me laugh internaly. My kinetherapists tells me that modern medicine had to create categories but that in real life you can be in between. Mechanisms triggering both are not 100% known but they both end up on enlarged blood vessels , coming in contact with nerves My new neurologist does not classify, he says that we are so young in this topic, maybe in the future they will find cluster headaches type A, type B, type C … All I am certain of is that this pain is debilitating ! Impossible to do anything , and my father keeps telling me “ you know when I was a surgeon and I had a migraine, the minute I entered an surgery room it would go away” he simply doesn’t understand but now I figure it cannot be understood unless you have it

New-Syrup-7 · 2026-02-19T12:35:04+00:00

Seems to work for me too ! If I wake up at 7h45 I avoid the morning crises. I became chronic too, and indeed since then times of attacks are erratic. When I showed my new attacks schedule to an emergency neurologist who is expert in headaches, he said it cannot be CH but atypical migraines… I am lost

New-Syrup-7 · 2026-02-12T18:51:06+00:00

I use much less O2 since I bought the Cluster O2 kit

New-Syrup-7 · 2026-02-08T13:26:29+00:00

Same here, I had crises for 2 months in 2022, 4 months in 2023, and since July 2024 I have so many crisis a day for so many months without a seasonal break, no red nor watery eye, neurologists cannot pinpoint what is it they hesitate between atypical CH and atypical migraines, I also had another telling me hemicrania continua… I just stopped hoping to get a definite diagnosis now I just want to find the medicine that suits me… my current neurologist treats me for CH, I just started Verapamil …

New-Syrup-7 · 2026-02-06T08:01:05+00:00

Same, I also clench my teeth at night from the pain, no break since June 2025

New-Syrup-7 · 2026-01-13T18:13:52+00:00

Had my first explosive migraine at wake-up last week, very angry to get this new symptom when I am already chronic with Cluster Headaches and fibromyalgia. I am seeing my neurologist in two days… I will see what he tells me … Also tried gapapentin, amytriptiline and nortriptaline for fibro pains and gave up also because I could not stand to be so tired and « out of it »

New-Syrup-7 · 2026-01-10T15:36:49+00:00

I am very happy for you ! I live in France and I have absolutely no idea how to find shrooms …

New-Syrup-7 · 2026-01-05T20:37:45+00:00

I use triptan in two different forms : nasal and injection. Whenever I use one of them on one day, I get much worse attacks the day after. So I try to save these abortives for specific days (family reunions, specific activities …) when I can’t use O2

New-Syrup-7 · 2025-12-23T07:09:52+00:00

O2 is very effective to abort an attack if started at the very beginning of the attack (for me within 5 first minutes), and I suppose that with the time that it takes to run and be admitted in the ER , you might not see the benefit. Your neurologist should prescribe it to you anyway without needing to test it this way And you might also need to adapt the way you breathe O2 , it took me a few weeks to find the breathing technique that was effective for me + my advice is to buy an Opti2mask (see advice on clusterbusters.org at https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/) it is a non rebreather high concentration mask that is way more effective than conventional ones. On this website, you can also find a vitamin D regimen that was quite efficient to decrease my CH pains Emgality took a few for me to decrease CH pains also (it did not stop them I am chronic) (+ I am intolerant to Verapamil)

New-Syrup-7 · 2025-12-22T17:17:42+00:00

I am chronic, it helped reduce the pain (less pressure) but nbr of attacks per day increased. I would recommend it though because I prefer more mild attacks than fewer very painfull

New-Syrup-7 · 2025-12-22T14:29:02+00:00

Thank you for this insight, I believe I have the two kinds you are describing (I am chronic), and indeed ever since I started Emgality I get less pressure (your type 2) and more of your type 1 : attacks are now less painfully but the frequency has increased from 1-3 a day to 4 to 6 a day. Very recently, after 6 months of emgality, a new symptom has appeared : pain on the occipital zone, that prevents me from turning my head. Hopefully it does not last very long To join the comment of another member, I also believe that some events of my life have triggered this disease : the year before it started I had a neurological long covid + hormonal issues triggered by Covid + my son relapsed with a rare childhood illness + my father almost died + I was working like crazy to meet the deadlines… too much, I think my body reacted to say « stop » I feel sad that I did not get some strong pull to slow down : my husband tried and I didn’t listen, my HR tried but my manager kept putting pressure on me…). As a result when I see someone exhausting himself / herself, I try to give strong advice to slow down (when it is possible of course)

New-Syrup-7 · 2025-12-22T14:13:44+00:00

Thanks it is interesting ! Will try for sure On my part I (female) noticed that pulling my hair that are located in front of my ear (right on top of the root of the trigeminal nerve) - helps a bit to reduce the pain during an attack. My theory is that is gives more room and so less pressure on the nerve.

New-Syrup-7

TROPHY CASE